Let’s not just be ‘aware’ of autism; let’s try to become more inclusive
We need to spark a cultural change, says father of a 6-year-old who’s on the spectrum
Autism Awareness Month?
How about “Autism is here, so get used to it because it’s not going anywhere” Month?
Or “Autism isn’t a death sentence, so learn something about it before you make insensitive comments at the grocery store” Month?
Or “Autism isn’t some fake, designer make-believe disorder, so get off your soapbox, you judgmental twit” Month?
As the father of a 6-year-old boy on the spectrum, I have no issues with creating more awareness among the grizzled masses — of which I was formerly one — who associate this skyrocketing developmental disorder with the movie Rain Man and the nerd on The Big Bang Theory.
But it takes more than being “aware” of something to spark cultural change.
It takes more than noticing someone off in a corner to nudge things in the right direction.
Autism is now the fastest-growing, most underfunded developmental disorder in the U.S. — and therefore also in Canada — affecting one in 68 kids, one in 42 boys.
Why? No one knows. Better diagnostic tools? Environmental boogeyman? Evolution of the human race?
It doesn’t matter. Many of these kids are bright, capable and eager to make their mark.
And society — swayed by stereotypes, frightened of what it doesn’t understand — has little idea how to help.
Advocacy groups such as Autism Speaks want to demonize them, presenting them as soulless tragedies whose parents are saints (trust me, we’re not).
Medical researchers devote millions to finding a genetic link at the expense of on-the-ground supports, a subtle insult that sends the message: “We have to figure out the cause, so we can eradicate this pox upon humanity.”
Ask anyone with autism if they appreciate these gross misrepresentations, if they like being portrayed as real-life versions of The Walking Dead. Never mind. I already know the answer. It’s “no.” So I’m glad to see at least one autism organization — Autism Services Waterloo Region — has gone rogue, turning away from the standard “awareness” campaign and veering forcefully toward “inclusion,” a term that, in a general sense, means, “We don’t care if you’re different. We want you in our group.’’
It’s a concept that’s no stranger in our house. There’s the autism thing. The Jewish intermarriage thing. The blended family thing.
If I got on a soapbox and thundered disapproval every time someone in our colourfully dysfunctional tribe did something that bucked convention — Santa Claus in a kippah? — I’d be like one of those Republican blowhards railing against evolution, or an aging Southerner who thinks segregation was a good thing.
You can’t fight progress. What would be the point?
When Max was diagnosed at the age of 3, after 18 months of dramatic meltdowns over improperly buttered toast or surprise shortcuts to daycare, it became clear that belonging to the kind of cloyingly adorable families I grew up watching on TV was going to be, well, a stretch.
Can you imagine The Brady Bunch with Bobby melting down over homework because when he spelled the word “plant,” he mistakenly wrote the T in uppercase?
Or Happy Days with Fonzie bonking Mrs. C in the stomach when she urged him to stop giggling hysterically and kindly eat his string beans?
Or Leave It To Beaver’s boyish hero screaming “BE QUIET!!!” when older brother Wally’s gentle snoring was misperceived as an amplified Chinese gong? (“Ward, I’m worried about the Beaver,” June might exclaim. “I think he might have autism.”)
Actually, I could sort of imagine those things.
But they’re fantasies, a blandiferous crock even in the eras in which they were made, the American dream in so many coloured pixels, engineered for mass consumption.
Real life is far less tidy and, I have to say, eminently more interesting.
Never mind that Max — who has resisted every attempt to turn him into a deferential yes-man — melts down if you ask him to repeat some garbled, inaudible request that, in his mind, should have been perfectly understood the first time.
Never mind that he gets trapped in brain-locked paradoxes that alternate between two opposing, yet equally distasteful realities: “I CAN’T SLEEP!” he’ll groan inconsolably, followed by a loud complaint: “I’M TOO TIRED!” (repeat 700 times).
Max is charming. I’m not just saying this as his dad. People genuinely like him. He’s bright, curious and has a guileless innocence they find endearing.
When I walk with him into his school — as I usually do, because he’s been late 47 times since September due to meltdowns over the correct positioning of his scarf — he gets the same reaction Al Waxman did in King of Kensington.
“Hi Max! How’s it goin’, Max! I brought this Pokemon card for you, Max! Max, can you come to my birthday party?”
No one told them to be nice. They just are. Because at age 6, Max’s quirks don’t register. He’s one of the gang.
This doesn’t negate his challenges: the overstimulation that looms on the fringes of his consciousness like a persistent gnat, the rigorous inflexibility, the inability to grasp abstract concepts.
But it does create an environment where Max can fit in as Max.
And if you don’t think this is important to him, you don’t know anything about autism. Or kids.
I can hear the naysayers already. What’s all this nonsense about inclusion and diversity? Why can’t everyone just stick to their own kind? Aren’t there specialneeds classes for kids with autism?
Guess what? Autism exists on a spectrum wider than the Grand Canyon.
It could be someone profoundly disabled who needs help with basic tasks.
It could be a kid like Max, who struggles with sensory issues and inflexibility, but values friends and reads above grade level.
Or it could be the 16-year-old physics prodigy at Waterloo’s Perimeter Institute, who cites autism as the source of his scientific genius.
When people like Jerry Seinfeld muse openly about whether they’re “on the spectrum” — he isn’t — it becomes less a question of who exhibits symptoms than a matter of degree.
Overstimulation. Inflexibility. Perfectionism. Social discomfort.
I don’t know about you, but I struggled with every one of these things at various times in my life.
And guess what? I’m not on the spectrum.
“It’s the ‘other’ing — thinking autistic people are so different,” notes Jessica Hutchison, program manager at Autism Services Waterloo Region.
“If you spend more than five seconds with someone who’s autistic, you’d find you have more in common than you think you do.” This is the message that needs to get out: That autism may pose challenges, but isn’t something to be feared.
That parents whose children are diagnosed needn’t jump off the nearest bridge.
That people with autism aren’t freaks, geeks and social lepers.
That given the proper supports, they can dream big and achieve great things.
Just like you. Joel Rubinoff writes for the Waterloo Region Record. Email him at jrubinoff@therecord.com.